Unless something really turns around with respect to symptoms it looks like I'm going to be on prednisone at 40mg until the end of February when I see the pulmonologist. My doctor is reluctant to taper because even though I've been at 40mg for the last week, as I keep getting mild or moderate flare ups even on 40mg.

I'm not very happy about this. This seems like a very long time to be on prednisone at such a high dose. If it is really true that we don't taper then except for the 17 day attempt at tapering I'll have been on 40mg for 70 days. It also means that if I do have a serious flare I'll get even more prednisone on top of 40mg - all the more to taper with.

When we tried to taper from 40mg around Chistmastime, we got down to 20mg and then I had a spill that wasn't quite bad enough to go to A&E but still took several hours of nebs every two hours before things got to a point where I wasn't worrying about how long I could last working that hard to breath. (I would have gone if I felt I was really tiring – but I wasn't at that point yet ). That was what put the prednisone back up to 40mg last week.

I was hoping that maybe we would be able to start tapering again tomorrow, but my body just isn't cooperating.

The fact that I'm travelling to the US next week for a two week stay is also a factor in my doctor's reluctance to taper. Maybe a taper isn't such a good idea when I'm away from home, especially since plane flights increase the risk of a cold and hence a flare up? This whole asthma episode kicked off at the end of October when I caught a cold after flying to the US at the end of last October.

I'm trying not to be upset about how long this exacerbation is lasting. I was really hoping that this exacerbation that started in October would be done by now before this trip. So that's disappointing.

I have to buy a travel nebulizer. Two months ago I didn't want to buy a nebulizer because I viewed this situation as temporary and so borrowed one from a local charity that loans out temporary medical equipment. But I can't take it out of the country and even if I could it is too large to travel with.

I've never travelled knowing in advance that I was sick or having to think about what if I need medical care whilst abroad. I grew up in the US and spent the early part of my career there so the system isn't entirely strange, but since then I've either been in the UK or Israel, both of which have nationalized systems that work very differently.

On Sunday I have to go see my doctor (we talked tonight by phone) because he wants to check my oxygenation before I fly. I don't really think it is low nor does he – I have no pattern of that, but even the fact that it has to be considered, leaves me sad. Yet this exacerbation has been going on so long it feels like par for the course.

The trip cannot be cancelled or postponed. The trip itself is likely to be stressful as well although I am very glad it is happening. I will be going to the US to testify as a victim-witness in a trial that has been 17 years in the making and involves a life threatening crime. The prosecutor is hoping to put the defendant behind bars for life. I'm dealing with the emotional stress at this point by being a bit of a dizz-case on top of whatever tiredness and distraction is due to the asthma.

In addition, I had a miscarriage two and a half years ago. Had the child been born this would be around the time of their second birthday.

So I guess I have a lot on my plate: the fact that breathing still isn't easy after a week of rather high pred, a distinct possibility of long term pred use, a trip, a trial, the memory of a loss.

12 Replies

I know that nothing I say will probably help. But thank you for sharing and its all very understandably stressful.

Maybe part of the problem is that pred is messing somewhat with your moods as well as just making you feel generally run down etc. So unfortunately everything becomes harder but maybe it helps just to tell yourself that this problem is 'normal' with pred?

Sorry I dont think Im explaining myself very well and dont mean in any way to belittle what youre going through. Im afraid that I cant relate to the whole trial and miscarriage bit but deffo the pred blues!

I have been on pred for nearly 6yrs now but am very close to ending my tapering programme and swapping to hydrocortisone (fingers crossed). So what Im trtin to say is that you can never say never

I understand how difficult travelling with health probs is. Im doing a jig trying to find insurance at the mo and thats just france-uk. My uncle and family live in Sand Francisco so I have some notion of the US healthcare system.

Oh dear Im rambling pointlessly. Sorry.

Re a compact travelling neb I use the pari eflow rapid that is battery operated but can also have a plug that can have its end changed for worldwide use. I love it!

Huge Hugs

Rose xxxxxx

4 years agoHidden

Thank-you both.

I know that nothing I say will probably help.

Being heard does help. Of course, it doesn't change the facts, but it does help me let go and refocus on what needs to get done. Thank-you.

Though I usually try to focus on what will move things forward rather than where I am at the moment, sometimes I just need to vent. It's actually my way of not getting depressed because I find when I do just allow myself to feel what I need to feel it is easier to let it go and move on.

Re: travel insurance - I am working on it. Ironically, I had planned to go downtown to arrange it yesterday. In the morning I went out shopping with a friend, but when I got back I was really tired and also just going to the supermarket and back (two hours) ended up with two occasions where (first symptoms basis) I ended up using my reliever. I may be being extra cautious, but I really can't afford to risk a significant flare-up so close to the trip. So it became a sofa day instead.

Re:pred - hadn't thought of it adding to a general feeling of slowness, but it could be. Or perhaps my generally positive attitude is a bit down regulated? Not enough to be actual depression, but still less upbeat than would be normal for me?

At the moment, I don't think there is a chemical sort of depression, not that is if you mean, feeling down in a way that can't be connected in a reasonable way to actual stressors. All on its own any of the things I listed could be reasonable reasons to be down. Also lots of things easily make me smile. Still it is good to keep in mind, that if I do feel find myself feeling a general sense of ""blues"" to not give it too much weight because it might simply be a side effect.

As for the stressors themselves:

a) I'm 48 and although my period still is regular, the liklihood of my getting pregnant and carrying a child to term is slim, so the loss of the baby combines with feelings of possibly never having children of my own. No wanted child ever replaces another of course, but there is a special poignancy when another child is not likely an option. Still, I am grateful for even having a child (or potential child) to have wanted and lost - it's still better than never even having the hope of a child.

b) I was the one who could have easily been killed during the crime that will be tried. That's a big memory to go back to, although I consider it entirely worth it if it helps protect others by putting a dangerous person outside of the reach of general society.

Even if the outcome of the trial is not as wished for, I can take comfort that everyone involved has really gone to extra-ordianry efforts to make this happen. We can't always make the right thing happen despite best efforts. As I told the prosecutor three years ago when she asked how I felt about revisiting the story when they decided to bring the case out of storage and to trial: if we could guarantee best efforts always led to success, there would have been no crime and no need for a trial in the first place.

I don't believe the world asks of us more than best efforts and to see others work so hard is very important to me and creates a sense of rightness in the world, no matter what happens.

c) I know my doctor is just being prudent about the pred and tapering at this point. But his decisions also drive home that I'm not dealing with just an annoying sniffle here. It tends to throw the part of me that still wants to be an invincible teenager for a loop. (Yeah, that part is alive and well even at 48, but in the main I consider it a plus because I won't get too old and staid.).

d) All this health stuff is still very new to me, at least at this level. I'm back and forth about how all this fits into my general sense of life and self. With no obvious end in sight (BeeThere I like that word ""limbo""), it might make sense to think about moving forward with my life in ways that account for a high likelihood of on and off illness, sometimes of the more interfering sort. On the other hand, doing so feels a bit like giving in. I think this is just a process that has to work itself out over time.

I haven't really been able to work with all this illness nor do the kinds of things I would normally do to help out close friends and family. Two of my best friends, really more like sisters to me, had babies this fall. Normally, I'd be around to help out with childcare so they could get rest from time to time, but that hasn't really been an option. Also, I'm missing out on seeing my newest nieces develop. I'm also missing memories with the older kids. When we had snow on Thursday, I would have loved to come out and play with them in the snow, but my doctor actually ordered me not to go out given my track record of flare-ups in cold and wet.

There are always ways we can contribute. For instance, if I can't work a nine-to-five job or do consulting work that requires me to spend a lot of time up and about marketing myself, perhaps there are other kinds of work that are less time bound and other ways to look for work that require less being out and about. Professionally, I've mainly sold my analysis and problem solving skills - software engineering, management consulting - so maybe if I think creatively I can find a niche for myself that fits in with whatever health issues I have to deal with. None the less there is a learning curve here and new beginnings are always hard.

As for friends, if I can't help my friends by doing, there are still other ways I can be supportive and show I care. I think there are always ways to contribute to the world around us, no matter what our limits are.

Thank-you again for listening - especially if you got to the end of this rather long reflection.

4 years agoHidden

Being heard does help. Of course, it doesn't change the facts, but it does help me let go and refocus on what needs to get done. Thank-you.

Though I usually try to focus on what will move things forward rather than where I am at the moment, sometimes I just need to vent. It's actually my way of not getting depressed because I find when I do just allow myself to feel what I need to feel it is easier to let it go and move on.

I understand and can relate this. I often have the urge/need to write things down just to get it out, then I'll feel a bit better about it and also having written down some facts and thoughts can then figger out how to move forward. This is where AUK forum and all you lovely peeps has really helped me.

You really have got a lot on your plate and I really admire you for your determination to stand at the trial despite being poorly and having other things on your mind too.

I agree with others that pred can add to the problems. I find it hard to concentrate and have to be really aware to not let emotions overrun me.

I hope you feel better soon. x

4 years agoHidden

Hi Beth,

I'm so sorry you're going though all of that on top of the asthma. I've been in limbo myself with being on pred. since Sep. which is the longest I've ever had to be on it. Like you said, my body is not cooperating.

I just wanted to say as far as medical care goes here in the U.S. I would try to buy travel medical ins. for your trip as the first option. It's usually not too expensive. Approx. $120 USD which is worth the peace of mind, I think. But also I'm a social worker here (and probably not supposed to tell you this!), but if you really had a problem and it was an emergency, there are a few other options here (at least in my state and part of the country)that are available like charity care through the hospital and/or medicaid because it was an emergency admission. I can't promise anything of course, but it seems like you have other things to focus on during your trip too.

Bee

4 years agoHidden

Yay!

Totally with you on that. It is a learning curve and an adjustment that just needs to be made and isdifferent for everyone.

I sometimes wonder if I never got to the end of the accetance of my ealth probs amd am stuck in the ""using humour tpo ward things off"" well it works for me anyway

I also believe there must always be ways to help others and make good use of ones self etc. One doesnt have to be physically pesent all te time etc.

I admire ypu very much for your efforts woth the trial (ive never had the courage for similar action myself) and that you are able to be thankful for a pregnancy even if it didnt have the desired outcome. I dont suppose Ill ever uave kids so I dont suppose I really understand but still...

Hugs keep it up!

Rose xx

4 years agoHidden

Hi Beth,

Like the others, I can't really offer anything constructive, but that is an awful lot to deal with all at once. And pred will not be helping at all; I was like an emotional yo-yo last time I was on it (for only a month) and I had nothing in particular going on in my life at the time: it was just the pred! So I can't imagine trying to deal with all that you have going on PLUS asthma and pred - it's hard to tell on a forum but you seem to be coping rather well given all that there is to deal with, if you are still able to smile at things - though for me this is actually how I get through difficulties, so perhaps it's helping though can be hard to do. I really hope that at least the trial goes as you would like it and is as stress-free as possible.

Although I'm in a different place from you with the asthma (and I do hope you start moving in this direction soon), I do get what you mean about 'where does it fit in?' I also have never thought of myself as an 'ill' person and insist on thinking of myself as a healthy person with a 'blip'. Easier to do now I'm getting somewhere (though I never quite trust that a 'good' period will last though I'm glad to have them), but I did it even when I was much worse - I always felt it was temporary, though 'limbo' was also a good word.

Also there is a context issue I find: on here I have it pretty lucky compared to the problems some people have to deal with, but I've realised to a lot of my friends, this seems like quite a big deal illness-wise. So it can depend who I'm talking to (also, any time I have to list medications or think about things I still can't do.)

I have no idea if this is a 'good' attitude to have or not. I suppose a balance between total denial and letting it take over is best, but not sure sometimes where that is.

Re travel insurance (I am much better at practical advice than emotional): I have no idea what's available to you in Israel, but from my experience I would advise going with a 'specialist' medical insurer - makes me feel like an old lady (see above) but worth it for the savings. You might get insured with the ones that say they 'cover medical conditions' but when I was looking at insurance for the US last year, I noticed the specialist ones were much cheaper than the general ones. In the end I went with MedicAlert, who gave me £116 for an annual trip (I was quoted £172 for single trip with one of the general ones). That was with 4/5 medications, not always able to do the walking however many yards without being SOB, waiting for tests but no admissions/ITU admissions and no need for oxygen (I hate to think how much it would be with those last ones.) There is a thread on travel insurance which I can find and bump up, if it would be any use - maybe not, as they may not be available in Israel?

Really thinking of you and hoping that things ease off soon in at least one respect and hopefully more.

4 years agoHidden

Once again - thank you all.

Philomena

* yes: genuinely happy - not a chin up sort.

* just a blip in a basically healthy life - yes, I see it that way too.

* not see self as sick = denial? Maybe, but maybe a healthy denial. Even if one is sick, is that really an identity to embrace? Obviously we need to acknowledge sick enough to take care of oneself, but the goal of taking care is to get out of 'sick' and back to healthy, so sick can't really be a stable identity.

The more things go on a long time, the more I think it is important not to identify with 'sick' but rather to figure out how to work within and move beyond the current limitations created by 'sick'. That way 'sick' is part of the background we have to work with rather than an identity or goal in its own right.

Lou - agreed about this forum and the people who contribute.

Updates:

Great weekend - walked to visit my close friend and her kids - definitely a big plus in the happy column.

Insurance - for a very minimal fee, turns out I can extend my Israeli health insurance abroad, to cover both new health issues and emergency treatment for any existing health issues. Arranged it today and am much relieved by that. Yay!

Also had a brief but good conversation about just how frustrating this is to have my health (breathing) go up and down but never get to healthy. As well as things I can't do because of this and how it impacts me. I was kind of feeling that the human side had gotten lost over the last few weeks. It's not only about peak flows and mgs of pred. Obviously, managing the emotional side is my job, but it helps to have that side acknowledged.

I think also we're both hoping that the severity of this exacerbation is due to the high stress at this point in my life and not a trend for the future of my asthma. (The first trip to the USA where I caught the cold that started this whole thing was also in connection with the trial - the trial was supposed to happen last October, but got nixed by hurricane Sandy).

My doctor is hopeful the pulmonologist will have some answers or at least new directions. Early on, he didn't think much about what the pulmonologist could add, but seems to have shifted. Not sure whether he is just trying to help me keep my spirits up, but it did help to hear him say that this might add some options. I do feel right now that we are shooting in the dark since we've used up all the standard solutions and don't have access to the kind of tests the pulmonologist can authorize and the data he can collect.

Neither of us are very happy about my being on a high dose of pred for several weeks. I'm relieved to hear his concern.

We discussed whether it was actually making a difference. It clearly isn't doing all we wish, but we know it is doing something because each time we've tried to go off it (twice no taper, third time with taper) once the pred goes down to a point, I start getting a lot more reactive, i.e. moderate to borderline severe flare-ups every 3-4 days for ridiculous reasons like singing or walking. However, he didn't go for my idea that maybe I should just put up with those flare-ups in order to avoid the side effects of pred since the flare-ups make life very uncomfortable, but aren't actually life threatening.

We also discussed some more or less ""maybe"" treatments that we could try before I see the pulmonologist, among them dietary magnesium supplements and some drug that was originally designed for use with COPD but sometimes also helps asthma. But trying them is going to have to wait till I get back from the US and also until we see where/if progress stabilizes on this dosage of pred, i.e. am I going to get back eventually to PFs of 460? We're trying to be systematic about things, so we can see what improvements go with what strategy.

Lots of questions to ask about all of this, but I think they probably should be in their own posts: magnesium supplements, how people decide about trade-offs for oral steroids among others.

4 years agoHidden

Beth

I know it all seems very complicated and slow processed but its a great thing that they are being so thorough andseem to have plenty more tricks up their sleeve. Maybe with some of the different meds the cons might prescribe the trade pff for pred could become easier?

Stay safe

rose xx

4 years agoHidden

Now that I'm back from my trip to the US, I thought I'd update this thread.

The trial outcome better than I could have imagined. The defendant was charged with one count of kidnapping with intent to defile and three different rape charges – the kidnapping charge was in lieu of attempted murder because they can only use the degree of force for one charge and oddly kidnapping has a greater minimum sentence than attempted murder.

In the end minimum sentences didn't matter. He was convicted on all counts and the jury recommended that he get four consecutive life sentences one for each charge. Kind of weird that a single crime against me resulted in a fourfold life sentence for the perp. He literally cannot live long enough to serve his sentence. Sentences like that don't usually happen when adults walk away alive from an attack.

Trip: turned out not to be nearly as difficult as I expected. I got a lot of help so I could avoid triggers like cold air. Friends brought food to the hotel room so I didn't need to go out in the cold to restaurants in search of food and went out of their way to minimize my needing to walk in the cold when we went out to eat. The victims advocate picked me up at the hotel and dropped me off at the court house door so I didn't have to walk through parking lots in cold air.

People were really nice about about my needing the reliever/nebulizer. Turns out there are a lot of asthmatics in the world. Second chair for the prosecution has mild asthma and we were able to discuss a strategy in case I had to testify for several hours and all that talking stirred things up. One of the police witnesses saw my nebulizer and joked that if he'd known I was an asthmatic he would have brought along the one he has at home (son has asthma) so I could borrow it.

Also the 40mg pred I think helped and things generally improved during the trip – I even managed a few days where symptoms were more or less intermittent and peak flow returned to 460 which for now is my personal best (we don't actually know what my real personal best is because I haven't been measuring it in years and only started measuring it during this exacerbation).

Things aren't quite so good now, but at least things were good at the time they mattered most. Very happy about that.

Neb: I got a nebulizer with a battery for travelling. It works a lot faster than the one I was borrowing. I've really resisted the idea of having my own neb because it seemed like an acknowledgement that asthma is here to stay and this exacerbation is not just a once every twenty years over-reaction to a cold.

But at the end of the day, I'm really happy about having it. It has a battery so necaeding nebs no longer mean that I have to be at home just to take medication. Also it works at lot faster than the one I was borrowing so taking meds eats up less of my time (I pre-treat with a neb before taking seretide).

4 years agoHidden

Now that I'm back from my trip to the US, I thought I'd update this thread.

The trial outcome better than I could have imagined. The defendant was charged with one count of kidnapping with intent to defile and three different rape charges – the kidnapping charge was in lieu of attempted murder because they can only use the degree of force for one charge and oddly kidnapping has a greater minimum sentence than attempted murder.

In the end minimum sentences didn't matter. He was convicted on all counts and the jury recommended that he get four consecutive life sentences one for each charge. Kind of weird that a single crime against me resulted in a fourfold life sentence for the perp. He literally cannot live long enough to serve his sentence. Sentences like that don't usually happen when adults walk away alive from an attack.

Wow, Beth. I am really glad that the trip went well considering and that everyone was so helpful, but I am not surprised you were worried about all sorts of things to do with this! v glad that the outcome was a good one for you and I hope it helps you to put all that behind you as much as possible since I can only imagine what a horrendous experience it must have been for you at the time, and seeing him again can't have helped.

Also glad your asthma more or less behaved itself so you didn't have to deal with that too. Really hoping that now that and other things start to look up for you as well.

For some reason I completely missed this thread before. Well done for being so brave and strong to take part in the trial. I am so pleased for you at the outcome. (I wish there was private messaging as I have experienced a similar trial in the last decade. It is amazing how much you can move forward in the years following.)

I hope now that stress is over your asthma improves.

Hugs and best wishes xxx

4 years agoHidden

You have deserved huge hugs and loads of respect from me. I think youre amazingly strong for having gone throgh with this. Although ive experienced similar crimes ive never had the courage to go to trial etc.

Glad the asthma behaved and that everyone was so helpful and understanding about it. Hoping that the stress levels can now settle down and help in improving the asthma. Take care.